How do we get MS up the agenda in resource poor environments? #PoliticalSpeak #MSBlog #OffLabel

"Just back from a whirlwind trip to Peru, where MS is classified as a rare disease. Several neurologists spoke to me about the difficulty they have with access to treatments, particularly the more effective high-cost treatments. It reconfirms what we know already that MS is considered a rich world disease and is simply off the agenda in countries such as Peru, which is classified by the World Bank as an upper middle income country."

"On reading this week's NEJM the perspective article below summarises all the issues we have in terms of getting MSers in resource poor countries MS services, only it is written from an oncology perspective. Simply replace the word cancer with MS, oncologist with neurologist, pathology with MRI scanners and you will see what I mean. What can we do to help? Is our essential off-label MS DMT list sufficient? Far from it, I now realise the list as simply being an intellectual exercise to alleviate my guilt; my guilt of inactivity. What is ultimately required is not just academic ivory tower posturing and research, but activism and political will."

..... In his 2016 State of the Union address, President Barack Obama called for a “moonshot” to cure cancer....

..... Drug-approval times have been shrinking, and the embarrassment of riches has renewed the focus on defining the proper sequence and combination of therapies in this field. In some instances, in fact, we have so many established or promising agents that we really don’t know what to do with them all.....

...... These advances are exhilarating not only for scientists but also for society....

...... But I now live in Malawi, a small, resource-limited country in southern Africa with a population of 17 million. From here, it can be difficult to appreciate the tangible fruits of a decades-long international war on cancer. Despite small daily victories and immense heroism on the part of patients and their families, the situation here reflects an abject failure of the worldwide cancer community. The neglect spans the continuum from awareness to prevention, diagnosis, treatment, and palliation......

...... To my constant surprise, I am often asked by clinicians, researchers, funders, and policymakers whether people get cancer in Malawi. They certainly do, as our clinics clearly attest, and the burden is rapidly increasing owing to the growth and aging of the population, as well as to the human immunodeficiency virus (HIV). Public-sector provision of antiretroviral therapy (ART) began in Malawi in 2004, and the HIV prevalence in the country is now 10%, with 67% ART coverage.....

...... No diagnostic pathology services existed in Lilongwe, Malawi’s capital and home to more than 1 million people, until 2011, when the University of North Carolina helped the Ministry of Health build and staff a pathology laboratory....

...... In terms of treatment, no radiotherapy is available, and despite repeated demonstrations that cancer can be cured even here if old drugs are consistently available and properly used, we routinely stock out of generic chemotherapy medicines that were licensed in the 1960s or 1970s. There is no broad mechanism, like that in place for HIV, to ensure sustained, reliable access to either old chemotherapy medicines or newer, noncytotoxic, standard-of-care agents. Finally, palliative care often amounts to little more than a few doses of morphine that are woefully inadequate for alleviating symptoms.....

...... I find it unacceptable that the most basic, decades-old elements of oncology care are absent in Malawi, while cancer-related expenditures are skyrocketing in other parts of the world to levels that are unsustainable even in high-income countries. Allowing such disparities to persist is an ethical choice......

..... But funding cancer programs solely through research grants can have distorting effects on agendas, skewing activities toward the production of research articles rather than effective treatment or palliation for patients. “Scholarship” can sometimes amount to little more than repeated recitations of the challenges faced or shipping of tumor tissue to international laboratories for assays with little immediate relevance to local populations; however important they may be, mechanistic insights will not benefit Malawians in the short or medium term if medicines against “druggable” targets remain unavailable and the supply of even very old drugs is inconsistent. It is incumbent on us as a scientific community to generate not just citations but better outcomes for the poorest patients in the world......

....... Moreover, clinicians and scientists are not enough. Science was essential but insufficient to catalyze the international movement that transformed HIV from an existential threat in sub-Saharan African countries to a prototypical global health success story. What was ultimately required was not just research but broad civil-society activism and political will. Malawians with HIV can now live normal lives, for which we thank protesters who stormed international meetings over many decades to demand action. A similar energy now drives our moonshot dreams for cancer, but I believe we must also commit ourselves to expending a small fraction of that energy to control cancer, using proven methods, in places like Malawi. Shooting for the moon is important, but so is shooting for a world that is just and equitable......